Stroke Warriors' Voices- snippets of conversations on our Whatsapp Group

This page is a small compilation of snippets of conversations on our WhatsApp group. Hopefully it will serve to inform as well as inspire all.

XXXX is good. I had an attendant for two months after my husband suffered a stroke. Very professional.

– Anadhi Girdhar

I have used XXX, here in Hyderabad, as mentioned in my story. My family and I were happy with the services. A friend in Bangalore went to XXXX and was happy with their services. One suggestion I have is to be specific with the requirement meaning you want a very capable person with atleast x number of years of experience for a survivor of x age. That kinda helps them filter their database. Hope that helps.

– S. Sivakumar

Google XXXX, will be helpful

– Srinivas Piyati

Yeah. CBD oil is the next miracle fix. No scientific evidence in hundreds of studies done so far except for nausea/vomitting. THC/CBD combo has some evidence in Multiple Sclerosis and certain nerve pains. But the caveat is any compound containing THC has significant risk for psychological & psychiatric effects and those with only CBD do nothing for pain. Generalisation that it “helps with stroke” is unlikely. Some Specific symptoms – maybe apetite stimulant, possibly.

My sister in law is a pain management specialist. This is her opinion on CBD oil.

– Nandini

Shashi this is Superb yes lot of strength in prayers 🙏Today is a good day my Ex husband also comes home today after a month he is recovering slowly and steadily docs feel recovery at home will be better and faster . Please all of you continue to keep him in your prayers 🙏

– Neenu

All the prayers and goodwill worked. Husband’s scan reports are normal and was discharged an hour ago. Thanks, everybody! 🙏

– Shashi Narendran

Great thoughts and discussion. My opinion – As always : create awareness and knowledge amongst the group members on what is evidence – how do you believe it and utilise it. The points about documentation are very valid but it needs to be scientifically validated and if it remains effective then we can obviously use it.

I suggest that we conduct a series of webinars for our members on different topics that are considered highly relevant. I am happy to do one on my above suggestion – “appreciating evidence as consumers of care”

– Dr. Sureshkumar Kannan

Stroke is life shattering for the patient & their loved ones. It is crucial that we all respect the intention of only supporting each other on this group because this is not a platform for selling or promoting any product or experience. We need to limit ourselves to first-hand experience only. And even then it needs to have scientific basis & needs to be vetted through thorough review. If one is not sure, best is to please refrain.In any case, the brain is a complex organ & each stroke is different. In all likelihood, the medical professionals treating that particular person are the best positioned to evaluate each case & recommend options. Hence, we must focus ourselves to providing support & encouragement.

– Hetal Hariya

https://g.co/kgs/v38DR2
Interesting watch on Netflix about the power of mind to heal our body

– Nandini

Thank you, Suresh.. It just humbles me to think there are so many people out there who I hardly know are wishing and praying for us..Sure we’ll come through this successfully.🙏

– Shashi Narendran

Yes sir, he is recovering….but the pace is little slow…we are still in search of good speech pathologist in Banglore…though we have one speech pathologist and a physiotherapist working on him..but this group is really really a good one…I find HOPE here that’s the basis of life…most important thing which gives breath to persistence and perseverance…🙏🏻🙏🏻🙏🏻

– Vikas Sehgal

Wishing you lot of strength. It is ok to not feel positive all the time, especially during such tough circumstances.It is natural to feel like wanting to give up sometimes. Please remember you have done it earlier and you will be able to do it again. You are not alone. We are cheering for his recovery and for your strength.Please ask for help whenever you feel the need.

– Hetal Hariya

Sure rajvi ji ,i run stroke specific Neurorehabilitation centre in Hyderabad called Ucchvas I’m pasting the link below. You can reach anytime for any kind of guidance ,Robotics are not mandatory ,there are advantages and disadvantages too with them

– Vijay Bathina

Thanks for adding me to the group Hardeep. Hi everyone, I am Rajvi. My mother (67) had an ischemic stroke that affected her pons region 11 days ago, leaving her right hemiplegic. Though I was quite shaken at first, reading about new discoveries and people’s recovery stories has made me really optimistic. She is a very positive and strong willed person and inspires me everyday even while she is bedridden. We’ve started with basic physiotherapy and seeing little improvements everyday is what keeps our spirits up. It would be helpful to know if other people have recommendations on types of rehabilitation and general advice.

– Rajvi Shah

https://strokesupport.in/વાયુપ્રદૂષણ/
Thanks very much to @Bharat Changela ji for the Gujarati translation. I have also posted it on FB Page as under :
https://www.facebook.com/strokesupportgujrati/posts/150830170082174
Please do circulate to yor Gujarati friends and others from wherever convenient. Many thanks ! If any else here would like to translate into another language similarly, please let me know. Thank you.

– Hardeep Sodhi

As I said earlier on itself, alternative medicines and treatments is a grey area without a body of data etc. At the same time, in case something has worked for any where allopathic medicine clearly didn’t , imho that is an experience not to be discarded but documented well so that it may perhaps be beneficially replicated by others as well, if they so choose. May I request those who have such data to contact me off group so that we may together make a good dossier and then put it on the group/ web with appropriate riders. Thereafter any who follows such regimens can in turn put forward his/her experiences so that with time the data becomes stronger. Hopefully such an ongoing exercise will be more useful to the whole community.

– Hardeep Sodhi

Yes. I have and am still using Ayurveda. As one can read in my story, I have experimented with everything but Unnani. Allopathic, western medicines, normal treatment – whatever one wants to term it, definitely got me out of the danger zone with quick intervention. However, to my mindset and affordability levels, I made a conscious informed decision to try other forms of treatment. I have tried allopathy, homeopathy, acupunture, Ayurveda and Sujok. What worked for me the most were Ayurveda and Sujok. Now, just because it worked on me, it does not mean it will work for others. It is upto that particular individual along with the concerned family members to do their homework properly and then take an informed decision. Ayurveda, by my personal experience is not only a variety of medicines but also certain dietary restrictions – simple enough to follow with our regular menu ( for example: increase intake of ginger & garlic while reducing intake of certain other things). Somewhere along the line, I also made the decision for myself that I was content with what movement I had regained through physiotherapy and started focusing more on mental activities and exercises ( neuroplasticity of sorts ).

S. Sivakumar

Brain continues to improve , recover , with adequate persistence Rehabilitation ( relapse or plateu in few cases with Recurrent Stroke Seizures or Single infraction Strategic Dementia )

– Sonal Chitnis

I would just like to add that every person’s journey is different and irrespective of the severity and type of stroke as Caregivers and Survivors if we continue to remain strong willed , focussed and positive recovery will happen . To what extent only time will tell . And in any case which human being is 100% . My mother had a paralytic stroke at the age of 84 she lived with me for four years after that and I live on the first floor and she used to with our help Climb and go down my stairs . Because she never gave up or quit 👍

– Neenu

It is fairly well established that recovery continues as long as efforts are made. Imho it is almost similar to exercising a muscle. Neuroplasticity is well known and clearly acknowledged now. See for example :
https://strokesupport.in/neuroplasticity/

– Hardeep Sodhi

Thanks much @Sonal Chitnis for all your efforts. Can we have a weekly joint session on this where the caregivers are trained in turn to provide basic speech therapy to the stroke affected – kind of ‘train the trainer’ program ? Maybe a schedule can be made in collaboration with all SLPs on this group , each one taking maybe one session, building up on what has already been covered by others… Thoughts of all SLPs here welcome..

– Hardeep Sodhi

Our group is becoming stronger , better , mORE Power to all Stroke Warrioirs, caregivers and we Advocates of brain health 😊

– Sonal Chitnis

The above is by no means a complete record. But can give to a newcomer as well as those intending to join in, an idea of what we discuss on the group, its advantages and limitations.

Join other Stroke Survivors, Caregivers and equipment/service providers for help, encouragement , knowledge sharing and most importantly – hope – via:
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Thank you VERY MUCH !